Barriers to excellent end-of-life care for patients with dementia

Abstract

While great strides have been made recently in improving end-of-life care in the United States, people with dementia often die with inadequate pain control, with feeding tubes in place, and without the benefits of hospice care. In this paper, we discuss the most important and persistent challenges to providing excellent end-of-life care for patients with dementia, including dementia not being viewed as a terminal illness; the nature of the course and treatment decisions in advanced dementia; assessment and management of symptoms; the caregiver experience and bereavement; and health systems issues. We suggest approaches for overcoming these barriers in the domains of education, clinical practice, and public policy. As the population ages, general internists increasingly will be called upon to provide primary care for a growing number of patients dying with dementia. There are great opportunities to improve end-of-life care for this vulnerable and underserved population.

Key words

palliative care end-of-life care dementia Alzheimer’s disease hospice

This research was supported by the Robert Wood Johnson Foundation through PEACE: Palliative Excellence in Alzheimer Care Efforts. Dr. Sachs also was supported by the Hulda B. and Maurice L. Rothschild Foundation. Dr. Shega also was supported by the Geriatric Academic Program Award from the National Institutes on Aging to the University of Chicago (K12AG00488-10).

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